Been reading through some documents from the previous NICE guideline procedure (Dolphin posted most of them in this thread). They give some insight into the normal course of events and what we could expect to happen next at NICE. I think at the first stage the Guideline Development Group (GDG, what we previous called the guideline committee) is to set out a series of key questions that will form the basis for a subsequent evidence review. The previous time these questions were: 1) What are the existing case definitions for chronic fatigue syndrome in adults and children and what evidence exists to substantiate or validate these case definitions? 2) Are there any substantiated or validated evaluations to support the diagnosis of chronic fatigue syndrome in adults and children? (Subquestion: In people presenting with early suspected CFS/ME (before 6 months) what are the risk factors/ prognostic flags that might be linked with progression to CFS/ME?) 3) Does the evidence show that any particular intervention or combination of interventions is effective in treatment, management or rehabilitation of adults and children with a diagnosis of CFS/ME? (Subquestion: In people presenting with early suspected CFS/ME what interventions might be effective in preventing progression to CFS/ME?) 4) What are the information needs of healthcare professionals, patients and carers? 5) What are the support needs of healthcare professionals, patients and carers? It will probably be important to have the controversy surrounding the research on GET/CBT form a separate question, making sure it's not simply included in the more general search for effective treatment trials. A separate question for this issue will be required to go into depth on the methodological flaws of the studies and the patient surveys that indicate harm by GET/CBT. Then it’s up to the technical staff to do an evidence review of these issues. Last time they were supported by a large report from the University of York. The problem was that this report only summarized RCT’s and mostly ignored patient surveys and scientific studies on PEM (these had to be assessed separately by the technical staff), making the evidence for GET/CBT look more solid than it was. Last time the technical staff came from The National Collaborating Centre for Primary Care (NCC-PC), which was based at the Royal College of General Practitioners (RCGP). I don’t know how these relate to each other (if they are similar with simply a different name) but this time the technical staff comes from the National Guideline Centre (NGC). As Andrew Dillon explained in response to the letter by Graham et al.: "We have commissioned the National Guideline Centre (NGC) to develop this guideline and they are responsible for managing the recruitment of the committee. Shortlisting and interviews are carried out by the chair or vice chair of the committee and the director of NICE’s Centre for Guidelines or an appointed deputy and/or a senior member of staff from the guideline developer. The NGC is a multi-disciplinary health services research team funded by NICE to produce evidence-based clinical practice guidelines on our behalf. It is hosted by the Royal College of Physicians (RCP) and it has governance partnerships with the Royal Colleges of General Practitioners, Nursing, Physicians and Surgeons and the RCP.” The more NICE documents I read, the more I believe that these unknown NGC persons will have a stronger influence on the NICE guideline than the actual Guideline Development Group. The document provided in this post (see below, somebody shared it on a Facebook group) in which the NGC presented itself to ME/CFS stakeholders, indicates that they will “search for evidence, abstract, distil and synthesize.” But their influence goes much further. Anyone who has taken a look at the minutes of the previous NICE meetings will have noticed that committee members mostly respond to a text that’s already there. I’m now pretty confident that the technical staff (the NGC) writes that text: they draft the guideline. The Guideline Development Group simply comments, gives directions and votes if a particular decision is to be made. That corresponds with what Charles Shepherd explained in a talk to the Sheffield ME & Fibromyalgia Group (the Section on NICE starts around minute 42:30). Shepherd said: “So the guideline group is now being brought together and the next stage is for the guideline group to then meet and then the evidence gathering process will start, so they will review all the published clinical trials […] So next year the group will be meeting - I think these sort of group meet every month or so, and they look at what’s coming in. The evidence is all analyzed by academics to give pointers to what is good quality evidence, poor quality evidence etc. etc. And then the process of writing the guideline starts. That’s what’s done by a professional team at NICE, it’s not actually done by members of the group themselves. And then the drafts are looked at, and then they go back to the stakeholders. […] And then finally […] the aim is to publish the guideline in October 2020.” The previous time, the GDG met on 15 occasions, at approximately monthly intervals. Interestingly the GDG was aided in making difficult decisions (for example should ferritin or B12 be tested in making the diagnosis of CFS/ME?) by a questionnaire. All stakeholder organisations registered with NICE in May 2005 were contacted and asked to nominate 5 to 50 people with knowledge or experience of CFS/ME to take part in the questionnaire. Questionnaires were sent to 399 participants. Of these, 219 completed the questionnaire (119 patients, 29 cares, 63 health care professionals and 8 unknowns). The answers to this questionnaire were used to help the GDG in making difficult decision but overall there was "good agreement between the GDG and the wider group in most areas".